I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).
Jeremiah has Autism.
Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.
Malachi has hypermobility and wears piedro boots to support his ankles
Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay
Zechariah was born with sepsis and has mild development delay.
Friday, 26 July 2013
Wednesday was my day off! Well, a day off from appointments anyway. I spent a big part of the day sorting out the outgrown clothes and putting them in labelled boxes to go up in the loft.
Thursday was mine and Ezekiel's 6 week check. All fine except my blood pressure was a bit high. I was holding a screaming Ezekiel at the time and willing the appointment to be finished so I could go and feed him so that's probably why.
Friday was physio. Ezekiel has low muscle tone in his arms and core and high muscle tone in his legs. We have some exercises to do with him and we see her again in 2 weeks.
Jeremiah and Isaac finished school on Monday. The health visitor came to weigh Ezekiel on Monday and she is so pleased with his weight gain we only have to get him weighed once a week now. This week has mostly been taken up by feeding, pumping, housework and various activities at home. I haven't attempted to take all 4 of them out on my own yet. Tomorrow we will be picking up the big car from the Vauxhall garage.
Sunday, 21 July 2013
On Sunday, Isaac had a birthday party to go to. Unfortunately I hadn't realised it would be a disco and I'd also forgotten to bring his ear defenders so it was a bit of a disaster and after 45 minutes of Isaac refusing to go more than a few yards away from the entrance we gave up and took him home. I did get to show off Ezekiel though which was good.
On Monday, Ezekiel had an appointment with audiology followed by another one with Nicola. He passed the first hearing test. When it came to the second test there was too much interference so we need to go back next month for another go. As I was coming out of Audiology I ran into the chaplain who conducted Elisha's funeral. It was so lovely to see her again and to show her Ezekiel. Then we went to see Nicola and Julia, the dietician. They were both really pleased with Ezekiel's progress. Nicola is going to keep an eye on his weight gain, muscle tone, clicky hip and head size (basically everything except his cleft lip and palate). Ezekiel's results of his initial genetics tests have come back normal and Nicola also explained why Ezekiel needed CPAP after really good apgar scores. Basically, the apgar scores show a baby's condition in the few minutes before birth. So Isaac, who had an initial apgar score of 5 was distressed in the last few minutes of labour but recovered quickly. Ezekiel was perfectly fine before he was taken out but after 30ish minutes of being born, his lungs got tired and he needed some help.
Will update on the rest of the week tomorrow.
Wednesday, 3 July 2013
Jeremiah turned 7 yesterday. My biggest rainbow baby is looking very grown up these days, with 2 of his baby teeth gone, an obsession with lego and beginning to favour star wars over Thomas the tank engine.